Why should you get involved in the LD NBS Action Network?
It is often helpful to be armed with information when approaching a Newborn Screening Advisory Board with a request to add a leukodystrophy. Though it may be hard to believe, it’s possible that many doctors have never heard of (or had a patient with) Krabbe, ALD, or MLD, and even if they have it’s unlikely that they have stayed current with their data and research.
Here is a website where you can find helpful publications from medical journals to read and share with decision-makers: https://www.ncbi.nlm.nih.gov/pmc/ Simply search for “Krabbe Disease” or “MLD” or whatever your specific Leukodystrophy of interest may be, and a large number of journal articles will appear. It may help to refine the search by articles only from the past five years to ensure that the data is current.
PubMed Central® (PMC)
Links to example NBS legislation:
Bryce’s Law – Indiana (Krabbe):
Aidan’s Law – New York (ALD):
Mabry Kate Webb Act – Tennessee (Krabbe):
Links to other LD websites:
Krabbe:
MLD:
Leukodystrophies:
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- https://ULF.org
- http://www.thecalliopejoyfoundation.org
- https://huntershope.org
- https://rarediseases.org/rare-diseases/leukodystrophy/
- https://www.chp.edu/our-services/rare-disease-therapy
- https://www.chop.edu/centers-programs/leukodystrophy-center
- https://www.huntershope.org/family-care/leukodystrophy-care-network/lcn-care-centers/
- https://www.leukodystrophyresourceresearch.org/
- https://theglia.org/advocacy-partners
International Leukodystrophy Organizations:
Rare Disease Advocacy Organizations:
Current Newborn Screening Legislation:
Navigate Newborn Screening Education: